We didn't make it home today. Yesterday, when Elizabeth seemed stable, (and having learned from our recent experience of going home, only to be readmitted) we asked the GI team to give her a "practice run" at her home regimen to determine if she'd be able to keep her fluid balance up while receiving all her calories and fluids via her g-tube before sending her home. So we tried it: We stopped her IV fluids, and fed her only pediasure via her g-tube. 16 diapers and two fevers later it was apparent by this morning that she was again dehydrated, as well as "acidodic" (her diarrhea was throwing off her sodium & fluid balance) and she wasn't absorbing her nutrition. Her poor little body simply isn't able to stay ahead. Her GI tract is clearly in bad shape and she's not ready for home yet. Ironically, this is actually an answer to prayer....at least the revelation of her need to stay for a few more days is an answer to prayer. After going through this a few times now, Matt and I have begun to pray: "God, we want her home, don't let her stay in the hospital one more day than necessary, but if there is anything harmful to her lurking under the surface that has yet to be discovered or addressed, then don't let her come home too soon." It's better that we discover this while we still have IV access, than to take her home and bring her back yet again.
Today she was back on IV fluids and tomorrow we'll introduce a formula that might be easier to digest. If that works, then we'll try again to discontinue the IV fluids and maybe be home by next week...though we've stopped "counting chickens" altogether these days. We're just taking it one day at a time. Matt's sleeping over tonight and Mom and I get to sleep at home. We did decide to delay my mom's flight home in the hopes that she could help us with the transition from the hospital...now we're just grateful for the extra set of hands for a few more days.
Thank you for your continued prayers. We're not falling off the cliff into the depths of despair, so they must be working. Goodnight.
Here are a few pictures:
Spending some time "Aah-shide" (outside) with Granna, on the "whee". We have access to a beautiful rooftop garden here that offers a nice place to take a short walk and relax a bit.
Baths in bed were much easier when Elizabeth didn't have any hair! Here she's protesting a scalp massage that would cost lots of mulah at a fancy salon. At least I didn't make her sit under the dryer!